World Chronic GVHD Day | February 17th

On the occasion of World Chronic GVHD Day, held on February 17, we stood alongside patients and families at the Awareness Conference on this condition, which took place at the Carlos III Health Institute in Madrid.

On February 17, marking World Graft-versus-Host Disease (GVHD) Day, the Josep Carreras Foundation attended the Awareness Conference on chronic GVHD held at the Carlos III Health Institute in Madrid.

The event, promoted by AEAL, the Spanish Association of People Affected by Lymphoma, Myeloma and Leukaemia, brought together institutional representatives, healthcare professionals, transplant organizations, and patient associations to address the main clinical, social, and healthcare challenges of chronic GVHD.

The session also included the active participation of representatives from the National Transplant Organization (ONT), the Spanish Group for Hematopoietic Transplantation (GETH), and AEAL. A review of the first year of the Chronic GVHD Manifesto was presented and also the presentation of the results of the Report on Chronic GVHD, promoted by the Josep Carreras Foundation Against Leukaemia.

The program focused on addressing key questions such as “What can we do to improve care for patients with chronic GVHD?” It also explored the “Social impact and lived experience of patients with chronic GVHD” and gave voice to real-life experiences under the theme “Living with Chronic GVHD,” including the presentation of the exhibition “The Skin as Witness: Between Life and Its Wound.”

Graft-versus-Host Disease is a potentially serious complication of allogeneic hematopoietic stem cell transplantation, in which donor cells attack the recipient’s tissues. It can manifest in either acute or chronic form, affecting the skin, mucous membranes, lungs, liver, and other organs, with a significant impact on quality of life. It may become a chronic, multisystemic, and disabling condition, although it often remains underestimated due to its low social and clinical visibility.

Study on the Real Impact of Chronic GVHD

As part of our commitment to patients affected by leukaemia and other oncohematological diseases, the Foundation has promoted the most comprehensive study carried out in Europe on the real impact of chronic GVHD, within our Patient Experience Program.

The main objective was to assess and understand the true impact of this condition in order to improve its management. The primary conclusion identified is the need to provide comprehensive care to both patients and caregivers, strengthening coordination between medical specialties.

The study concludes that chronic GVHD severely affects the daily lives of 7 out of 10 transplant patients. Eighty-two percent have had to modify their daily routines, and 65% experience persistent physical limitations such as extreme fatigue or difficulty climbing stairs. The skin and eyes are the most affected organs, along with joints, mucous membranes, and the digestive system.

The emotional impact is also significant: fear of relapse, constant uncertainty, and the need for psychological support that is not always adequately provided.

It is also a reality that affects families and caregivers. Eighty-two percent of caregivers have experienced direct work-related consequences, and many families face financial difficulties due to the costs derived from the disease.

Key Contributions from the 2026 GVHD Conference

The event highlighted several fundamental priorities:

• Early diagnosis and improved biomarkers, given the complexity and variability of GVHD.
• Integrative and multidisciplinary care models to address all dimensions: physical, emotional, social, and functional.
• Equity in access to innovative treatments and participation in clinical trials.
• The importance of structured and long-term follow-up, as well as the social and healthcare component, which is essential in a complex chronic disease.
• Patient testimonies highlighting challenges such as invisibility, acceptance of chronicity, persistent pain, and the difficulty of maintaining an active social life.
• Improving the well-being and quality of life of patients and caregivers.

An Alliance Between Organizations, Healthcare Professionals, and Patient Groups

We will continue working to improve the diagnosis and treatment of GVHD, promote research, ensure comprehensive support, and strengthen collaboration among social, clinical, and healthcare organizations in favour of patients and their families.

We would like to extend special recognition to all those who made this study possible by sharing their personal experiences. We also wish to acknowledge the work of medical and healthcare professionals, institutional spokespersons, and the various representatives from the clinical and associative fields who participated in the event, contributing their expertise and vision to advance together in improving care for people with GVHD.

We thank AEAL, ONT, and GETH for their commitment to raising awareness of the disease, its impact, and the identification of still unmet needs. We also wish to acknowledge SANOFI for its support of the study.